meds change

[stacey]

Hi everyone

I took xavier to the neurologists today after a surprise appointment came up and i am a bit unsure as to whether i actually came out victorious or not!

The doc has changed xaviers meds starting with decreasing the keppra 0.5ml a week.the frisium stays the same and the tegretol has a increase for the night time dose because i told the doc about nocturnal seizures.

He has started a new med called tiagabine which i havent heard of before and he has said that i have a week to see if it works but i might just see what happens.

I actually went into the appointment meaning to see about getting him off a med but so that he only had two meds now he is on 4 meds until the keppra is decreased enough. now i dont know whether to be happy with myself or not hehe!

the doc pointed out to me that he doesnt believe that neurofeedback works at all and i also mentioned the ketogenic diet and he doesnt believe that xavier would be disciplined enough to have it and i can agree with that.

Does anyone know info about tiagabine tablets?

 

[Nakamova]

I think the more meds someone is on, the harder it is to gauge how they're working, and to evaluate side effects. On the other hand, if that combo ends up working for your son, then that's all that matters. More info on tiagabine here: http://en.wikipedia.org/wiki/Tiagabine

the doc pointed out to me that he doesnt believe that neurofeedback works at all

I wonder if he's read any research about nfb or has had any direct experience with it. Unfortunately it's pretty common for the docs to be dismissive and close-minded -- they don't want to know more.

 

[stacey]

Hey

Thanks for the info about Tiagabine.

I am so frustrated right now because of advice given by my friends, I will point out that they aren't affected by E. one particular of my friends was a nurse abd she reads alot about meds and dieting and she can be almost obsessive as to what we are putting into our bodies.she has been saying that I should get him off the meds slowly and instead change his diet. I WANT to get him off the meds but I don't think it's as easy as just changing his diet and then he"ll be seizure free I wish it were !!

So I'm left feeling overwhelmed and that in the most part it's easy for them to say because they don't deal with the E on a daily basis.i don't think for now that the ketogenic diet will work for xavier because as it is I find it hard to feed him that would just complicate matters.

So I am getting the feeling of being more and more helpless and just want my baby boy to be better and not have to deal with this shit. I'm crying as I write this because it hurts to see him act so unlike him and I know it's the meds but I just want my beautiful boy back.

 

[KarenB]

First of all, sending you a cyber hug -- from a Mom who going though Hell right now as well. I think a part of me dies every time Jonathan has a seizure.

I'm not sure if it's been approved in Australia, but I believe the medicine Vigabratin (Sabiril) is often used for Tuberous Sclerosis.

Dr. Kossof of Johns Hopkins recommends the Keto diet for kids with TS. In a review of 12 children with Tuberous Sclerosis treated with the Keto diet at Johns Hopkins & Mass Gen, 11 of the 12 had at least a 50% reduction in seizures after 6 months on the diet, and 8 of the 12 had more than 90% seizure reduction, and 5 kids became seizure free for 5 months or more. That's actually a better response rate than kids with other types of epilepsy.

http://www.ncbi.nlm.nih.gov/pubmed/16190943

It ultimately is your decision -- you know what you are capable of, and you know your little boy better than anyone. My personal experience is that it's more important for the Mom to be disciplined than the child. Also, picky eaters can be a challenge, but our Jon actually became a much better eater once he started the diet.

If you want more info, feel free to pick my brain, and also there's lots of Moms and Dads at the Charlie Foundation website (plus Beth, a nutritionist with 18 years experience in the Keto diet) and Matthew's Friends' website who can share their stories, and offer lots of support should you decide to pursue this avenue of treatment.

 

[stacey]

karen

thanks for your help its very much appreciated.i am depressed and you have made me feel better